Friday, July 25, 2008

It's Friday, and Jessie has been at Cook Children's Hospital's "Transitional Care Unit" now for a week. Can you believe that? We've been here a week and Jessie has made phenomenal progress. I can't believe what has happened just in one week.

Jessie is walking!! We have to walk with her and hold a belt in case she trips...but she IS walking on her own!! Can you believe that!!! Things get better each day!

Today, she wanted to hop like a frog and she did....she wanted to bend down and pick something up and she did. When we got here a week ago, she could only stand and still needed about 50% assistance to walk. Now she wants to walk everywhere...even to therapy.

Thanks and Praise to God for watching over Jessie and healing her. And Thanks to Johns Hopkins Children's Center, Kennedy Krieger Institute, and Cook Children's Medical Center for providing the hands and guided by their talents from God to make things happen. Everyone: The doctors, surgeons, specialists, nurses, techs, nutritionists, therapists, child life, pastoral, and of course all the friends who visited to lift Jessie's spirits.

Jessie hasn't had any seizures since surgery on June 11th. I went back and watched newscasts before the surgery, and I couldn't believe how bad her seizures were. I had forgotten how much she twitched.

Jessie's Aunt Cyndi and Cousins Kacie, Adam, and Colton. Also Mom and her Stinky Brothers. You can see it on her face how happy she is to be back around family again. I think that having family and friends close accelerates the whole healing staff. Perhaps that is a reason to go ahead and start trying to get her home to Aledo. Hopefully we won't be up here at Cooks more than a couple of weeks more.

Thanks to Aunt Cyndi and the kids for helping us out the past week. We appreciate it guys and have a safe trip back to Lincoln, Nebraska.

Here's Jessie riding the rehab bike. She does really well, and can pretty much drive it herself.

The Adamies came for a visit today. Brett, Jessie, Nicki, and Shelly.

Look at these guys. They really lit up her face!!

After a hard day of rehab, it's time to drift off to a pink dream. You have to wonder how she got that left arm way above her head like that.... We didn't put it there.

After reading the book "Pinkalicious" today, she asked me tonight if too much pink would turn you pink. I told her no that it couldn't really happen. Thank goodness, or she would already be pinker than cotton candy.

Medical Notes: They've asked us to do some Botox injections on her thumb to loosen it up, however, based on an FDA warning and advice from quite a few friends of Hemi kids, we have chosen to not do Botox injections. We haven't heard of any hemi kids who get lasting results from them..and they can be very painful.

They are beginning to look at new ideas for orthotics as well for both her hand and leg. I can't wait to see what they try next and how that affects her use.

Jessie has some very random, but semi-purposeful movements in her right arm, but Dr. Carson tells us that it is just her brain rewiring. It is evidently normal for these kids.

She has had some nausea and vomiting in previous days, but none in the past 2 days. She looks really good.

7 comments:

Each time I check in on Jessie, I am awed at her progress. I am also awed at the blessings of our Lord! Praise to God who is healing Jessie each day. She is a living testament of His glory.LeeAnn HornRichardson, TX

Family DOES accelerate things. Wait until she goes home. See if they do the Saebo (arm thingie) - that's the one I'm trying to be patient in getting. Next week for Jessie, running and stair climbing!!! You can do it girl!!!

What glorious pictures! I am so impressed with Jessie's amazing progress in the past week alone. WOW! We do serve an awesome God! May He continue to hold you each in the palm of His hand and continue to bless each one of you!

Great update! Thank you for your ongoing updates! I look forward to visiting the blog and checking on Jessie. She is a ray of sunshine to my day.

Hope you all have an amazing week filled with God's wonderful blessings!

I CAN believe she has made this progress. anything is possible through the Lord. She is an amazing girl, and more amazing than anyone ive ever met. She is the most beautiful person, and this experience has made her one of the strongest too. I am still looking forward to doing a picture video for you guys. although my email has changed. I will email your family once things get a bit more settled, and etc, from my new email.

About Me

Jessie is 8 years-old and in 2nd Grade. She has 3 brothers, Matt(12), Jake(10) and Josh(10). She loves people, and never met a stranger. She loves to laugh and sing and play. Jessie was diagnosed with Rasmussen's Encephalitis(RE), which is a rare brain disease that usually attacks healthy children about her age. The only known treatment for this cruel disease is a hemispherectomy (surgical removal of one-half of the brain)
This is an account of Jessie's confrontation with RE and her families attempts to navigate through a new world to bring her the best care possible. Surgery was on June 11, 2008.
This Blog is an attempt to help people undertand this disease and surgery, and to help others with kids going through it to find comfort and resource from someone who has been there before.
Read from bottom, up. It will be updated continuously through Jessie's Miraculous Recovery.
**To add Comments, just click "Comments".Or, email Jessie at Jessie@Hallzoo.com.